[harley]

there needs to be a new pd awareness event. one where we, the people
that live with the disease, have the platform. the docs, researchers,
pharmacutical sp? companies, and general public are in the audience. if
you were on the panel, what would you most like to express to them?

[pegleg]

Great idea, harley. we may be closer than you think. Many well-known people are getting PD (Janet Reno, Michael J. Fox, Billy Grahan, etc.) and they are speaking out. but we (patients - just patients) are also getting our message out - we want to be heard.

I want them to know that although you "don't die from Parkinson's," your life resvolves around a medicine bottle that costs many half their income.

I want them to know that we in this for a l-o-n-g time, so don't deny us things to improve our quality of life. Don't limit our visits to the physical therapist - the chiropractor - the masseuse. Don't deny us disability income that we deserve and give it to those that don't.

I want them to know that everything changes when you have PD - your relationships with your spouse and children, with your employer, with your faith and spirituality, with your own mind.

I want them to know that it just isn't right for the best treatment known to be 40 years old and has side effects sometimes worse than the disease itself.

Let me on that soapbox!

Thanks, harley, for letting me vent.

Peg

[paula_w]

I would tell them that there has already been a culture revolution on the Internet. That we have learned to discriminate good information from bad. That the baby boomers are well informed and well connected - that databases COULD solve this illness. There is no reason for information not to be shared much better. The government needs to fund innovation all the way to the market.

We need the biotechs and are trying to learn and understand how it is for them. Are they doing the same for the people they serve? Or basically trying to win lawsuits and make money.

Some of their practices are shady to say the least; they must earn our trust or possibly go down. It was never any of our intentions to cause Amgen, for example, to go down. But if they do, it won't be our protesting the GDNF halt- they will bring themselves down.



paula

[indigogo]

Harley - you should have come to the NWPF conference on Saturday -

Directly after, Monique Giroux, Sierra Farris, Jeff Shaw and Bill Bell held a focus group discussion with patients to talk about quality of life. They are designing a new survey to make sure they are talking to patients about the right things. Relationships with family and friends and workplace issues were at the top of the list for the patients; the professionals quickly and clearly got the message that treating each patient's PD within the context of that patient's life situation is key to quality.

Their goal is to develop "best practices" of quality of care to insure what the patients want, the patients get.

As a side note: Dr. Giroux gave a presentation on therapies, new and old. I was impressed with her description of the GDNF trial having been stopped due to delivery system problems; she did not once mention safety, but said she hoped there would be future use for GDNF.

[harley]

i was debating going carey. these symposiams get to me at times due to all of the factual crap and lack of concentration on the personal side. sounds like i missed a good one. hopefully it was better organized than last year.

paula, i agree with what you are saying. i think many docs consider us to be uneducated puppets that should not question meds they prescribe, or info they tell us about things like "you are in blah blah blah stage". ok. so. what does that mean? on or off meds? whats next? these guys are great at throwing things out there and expecting us to just absorb it. i backed my neuro in the corner on my last visit because he told me to go ahead and start selegline while still on cymbalta. though i KNEW that the combination of the two could create a dangerous interation, when i mentioned this he puffed out his chest and said something on the order of, "I am god.. i say it will be fine. " it wasnt. i had a horrid reaction, and on day two of selegline, he took me off of it. it should not have to reach this point. grrrrrr.

what i want to say to them is how frustrating it is to be told that pd is a designer disease. i say hogwash. being put under an ism umbrella is not acceptable to me. i still think that if we are all looked at as individuals, not in a cluster, there may be a better chance of figuring this whole mess out. more concentration on brain chemistry change from stress should be explored. how many of us have had post tramatic stess disorder diagnosed? i have. stress can do alot of damage, even create seizures in the brain. hhhhhmmmm.

i need coffee. will probably come back with more later.

[Virginia Therese]

...and great responses from Peg, Paula, Carey...mine will be SO simple in comparison. I would simply like the public to know that such a thing as Parkinson's Disease EXISTS!!! It has been my observation that few...if any... in my experience have any idea of the existence of PD, no less, know the implications of the disease...and that, in itself, is so frustrating for me. Even when I've attempted to describe the disease...pointing out that it's CHRONIC, DEGENERATIVE, PROGRESSIVE AND WITH NO CURE, still, I always sense that they still just do NOT "get it"...and it's just one of those things that unless one has experienced, they can't understand. I even considered writing a pamphlet briefly describing the disease and the ramifications of the diagnosis of PD to distribute to ALL our friends and relatives!!! Just recently, a friend of my sister's succumbed to PD. My sister had not seen this person in many, many years, but did visit her shortly before she died...and, for the first time, my sister seemed to have at least some understanding of what it has meant for me...as carepartner to Doreen....AND, to Doreen, herself...to have PD. She was totally shocked to see her friend in such terrible condition...and I felt that my sister was finally and literally "shocked" into some understanding. Honestly, I so often feel like getting on a soap box and shouting to the entire world my message, but then, who would believe me? So, Harley...as I said...my response to your question pales in light of the other excellent responses that you received...but, at least I was able to vent my particular frustration...as simple as it may be, i.e., I just want the public to know that PD even EXISTS.

Therese

[vlhperry]

I would want Athenia Diagnostics there to present the genetic aspects of Mitochondrial disorders and explaint to the Parkinson's patients which genetic testing is available to help correctly diagnosis the symptoms. Follow Link:

http://www.athenadiagnostics.com/con...ular-disorders

MERRF - Myoclonic Epilepsy; Ragged Red Fibers

1. Parkinson syndrome, Neuropathy & Myopathy (A8344G)

MITOCHRONDRIAL DNA BREAKAGE SYNDROMES; AUTOSOMAL DOMINANT PEO
Occasional symptom, Parkinsonism

POLG Protein
Required formitochondrial DNA replication and repair.
Clinical features:

1. Muscle weakness
2. Neeuropathy; Sensory loss, Tendon reflexes ofter absent
3. Endocrine
4. Parkinsonism, onset: after PEO or 4th to 8th decade

VARIANT SYNDROME: MIRAS OR Mitochondrial recessive ataxia syndrome
Parkinsonism without External ophthalmoplegia

DOMINANT PEO
CNS; Cerebellar ataxia, Tremor, Parkinsonism; Depression Mental retardation

PEO+MYOPATHY & PARKINONISM
Onset: 30 - 74 years
Clinical Extrapyramidal: Akinesia; Rigidity; Rest tremor
Eyes: Ptosis; Ophtalmoplegia
Myopathy: Proximal and Facial weakness: Occasional distal leg weakeness, Hearing Loss (50%)

My favorite:

PKAN: Hallorvorden-Spaz syndrome

Genetics

• early onset rapidly progressive disease. Associated with null mutations.
• Motr mild disease with later age at onset; missense mutations; Likely to retain partial enzyme function

Atypical PKAN
Onset - Mean 13 to 14 years; Neurobehavioral disorders
Behavioral - Mood: Depression, Emotional Lability, Personality changes,
Cognitive decline, Speech Disorders (Palilalia & tachylalia, hypophonia, difficulty initiating speech.)
Extrapyramidal - Dystonia, Rigidity
Corticospinal: Spasticity
Progression: Slower than typical form, Loss of independent ambulation after 15 to 40 years. Intermittent periods of rapid clinical deterioration.
Pathology:
Deposition of iron Especially globnus pallidus and retina.
Muscle, Scattered fiber necrosis

MITOCHONDRIAL SYNDROMES; ADULT ONSET CNS

Parkinsonism
Young onset Parkinsonism caused by Mitochondriall DNA deletion (5kb)

With all of the above possible mutations or combinations, no wonder no two people have the same symptoms.

Vicky

[indigogo]

Been doing some further thinking on this and .....

I really don't care what the public thinks about Parkinson's, apart from the general knowledge that it exists and is among the many diseases that impact many lives that are all equally deserving of money, research and attention.

I think Michael J Fox has that covered.

My main concern for advocacy and awareness, and I think most of the responses in this thread speak to this already, is educating the doctors who are treating us, the researchers who are trying to cure us, and the family members and friends who care for us about the true nature of Parkinson's.

Maybe that's what you meant by public, Harley? A more targeted audience?

[Todd]

I've built an entire business around this issue. My personal belief is that I would simply tell the doctors, researchers, and the public about the realities of living with PD every day of our lives, and the impact it has on us physically, cognitively, and socially/emotionally. Education, advocacy, and awareness directed at those that are such a significant part of our treatment plans.

I've recently signed a deal to be part of the curriculum at a big Pharmacist training school, and am close to signing another deal with a huge nursing school. I'll be giving them a "patient's perspective" to hopefully enlighten them a little and show them the "human" side of the field they have chosen to study in. It's a start.

I also believe that while the recent PDF 50th Anniversary Symposium was great, with a huge audience and attendance by the top MDS's and researchers in the PD community attending, where was the patient voice? Nowhere. It was a slight whimper in the background and that frustrates me to no end.

I truly appreciate all the MJF has done, and will continue to do, for this community. But he has his own agenda and I personally don't think it falls in line with the majority of people with PD. I'm glad he's pushing the government and the research community, and I'm truly grateful for that. But who's pushing just as loudly (or effectively) for our daily quality of life?

What about the people who can barely afford their meds but don't qualify for the assistance programs? What about the people who've lost their jobs and have gone bankrupt due to this disease? Who've lost their home, family, friends, and dignity? What about those caught without Long Term Disability insurance? Or those who had it, only to lose it over a technicality like I did? Who's fighting for these people?

And when will the "major" PD organizations realize that their individual agendas are only harming the PD community instead of uniting and bringing us together to form a stronger, more unified and solidified voice?

I truly believe we need a HUGE awareness campaign, ala Breast Cancer Awareness, which has done a wonderful job for their disease. It would be great to walk into a grocery store one day and have the clerk ask me if I'd like to donate a dollar for PD research. Or, to see hundreds of products throughout the store with a PD logo on them, with a portion of the sales going to PD research. We, as a PD community, need to look at the model Breast Cancer Awareness has used to great success, and follow it.

Lastly, the PD community as a whole (and I'm talking patients here) need to get over the "embarrassment" factor and get out there and start making some noise however and wherever they can. There are certainly a handful of people with PD who have done amazing things for this community, and I'm inspired by all of them, their hard work, and dedication. But where is everyone else? There are millions of us with PD and a handful making noise just isn't enough, no matter how noble their efforts may be.

I would tell the doctors and researchers that PD sucks and I hate it with a passion because it affects every conceivable aspect of my life. And that it has changed my life dramatically, derailing my life in a way I'd never imagined.

But I'll be damned if I'll just lay down and quit. I'd tell them to stay on their toys because I'll be questioning them and challenging them at every opportunity. This is my health, my life, that we're talking about and I deserve the best quality of it that I can get. So be prepared for a fight, because I will keep swinging until I can't swing anymore.

Damn Harley, you got me all riled up! My rant is over (for now) and I'm stepping down off my soapbox...

[indigogo]

Todd - regarding the lack of patient voice at the PDF symposium; I can't comment on what happened on site because I was unable to attend at the last minute (although I do happen to know that at least one patient hosted a luncheon discussion table), but I do know about the inclusion of the patient voice in general at the PDF. On Saturday, the day after the symposium, the 2nd meeting of the PDF Patient Advisory Council (PPAC) was held. First convened just one year ago, PPAC consists of a dozen patients and a couple of caregivers who advise PDF throughout the year by phone on many adhoc issues and who also are working on an agenda of our own to identify unmet needs in the PD community in an attempt to direct at least a portion of PDF resources to projects deemed important by patients; issues relating to quality of life are huge on our list. I am on the council (I joined the meeting by phone as I was not in town); it was a competitive process that will be open again in another year for another round of selection.

Just so you know, I now live only on my Social Security Disability at the age of 49; had no medical insurance for 4 years after I lost my job until Medicare kicked in, lost my house and every bit of savings. I am only one voice, however. It takes lots; there really is no effective national forum for advocacy on social issues as PAN is reluctant to take up the flag (mostly due to staffing levels) and the other orgs defer to PAN as the single voice for all Parkinson's advocacy. I make my voice known there as well, serving on various committees. But again, it takes a critical mass; raising money and awareness for research and the cure is much easier for most orgs to tackle; dealing with how poor, depressed, chronically ill people deal with their daily lives does not sell well to donors; the cure is much more sexy!

As far as I know, only PDF involves patients in decision making in a formal way among all of the national orgs (besides PAN - they thrive on grassroots activism). PDF really is sticking its neck out in this regard - believe me, there is more than a little grumbling by researchers about the inclusion of patients even in the audience at these research events - that's how far we have yet to go.

Also, the PDF is only one organization - where are the others? I think you will find a greater patient voice present, and greater attention given to quality of life issues on the regional organization level. The Northwest Parkinson's Foundation, the Parkinson's Association of the Rockies in Denver, and associations in Texas, North Carolina, Arizona, Minnesota, etc. lead the way in this regard.

I commend your efforts to get the patient voice into the realm of health professionals training! Very important!

(p.s. my intent is not to challenge you, but rather to assure you that you are not alone - there are others speaking out as well!)